Determine to live life with flair and laughter. —Maya Angelou 7

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7 CONTACT INFORMATION & HELPFUL WEBSITES Facilitator Contact

If you have questions or concerns between Shaping the Journey: living with dementia sessions, please write them down and bring them up at our next session. If you are going to be late or have to miss a session, please call us to let us know. If we do not answer, please leave a message.

Name:___________________________________________________

Organization: _____________________________________________

Phone number: ____________________________________________

Alzheimer Society of Nova Scotia

The Alzheimer Society of Nova Scotia exists to alleviate the personal and social consequences of Alzheimer’s disease and other dementia in addition to promoting the search for the causes, treatments and cures. The Society provides information, education, support and referral. Contact us to learn more about programs and services in your community.

PROVINCIAL OFFICE 112-2717 Gladstone Street Halifax, NS B3K 0A4 Telephone: 902-422-7961

THE INFOLINE 422-7961 (HRM) or Toll-free outside of HRM: 1-800-611-6345

Fax: 902-422-7971Email: alzheimer@asns.caWebsite: www.alzheimer.ca/ns

While there are many good books and other resources available that discuss memory problems and dementia, most of these are directed at someone other than you, the person with memory loss or dementia. Thankfully, we are now seeing more and more resources written by, for, or at least inclusive of, the person with dementia. The Alzheimer Society of Nova Scotia has gathered together this list of resources for, and/or by persons with dementia. The list is not exhaustive, and it will be expanded as we become aware of new resources. We hope there will be something here for everyone.

You can call the Alzheimer InfoLine at any time to inquire about additions to this list, to ask about accessing any of the items listed, to discuss anything you’ve read in any of these resources, or to chat. We look forward to hearing from you.

Pamphlets and Brochures from Alzheimer Canada/ Alzheimer Society of Nova Scotia

The Alzheimer Society of Canada produces a wide variety of brochures and pamphlets. All are available through the Alzheimer Society of Nova Scotia upon request. These include:

All about me Dispelling the MythsFirst Steps: For Those Recently Diagnosed with Alzheimer DiseaseGetting a Diagnosis: Finding out If It Is Alzheimer DiseaseHeads Up for Healthier Living – For people with Alzheimer’s disease and their familiesPrograms and servicesTreatment Options – Information for People with Alzheimer’s Disease and their FamiliesWhat is Alzheimer Disease?Just for You – For people diagnosed with Alzheimer DiseaseShared Experiences – Suggestions for those living well with Alzheimer DiseaseThe Progression of Alzheimer’s disease – OverviewThe Progression of Alzheimer’s disease – Early StageDecision Making: Respecting Individual Choice

Resources for Persons with Early Stage Memory Loss (2013)

By Us For Us© Guides

The By Us For Us© Guides are a series of guides created by a group of talented and passionate persons with dementia and/or family partners in care. The guides are designed to equip persons with dementia with the necessary tools to enhance their well being and manage daily challenges. What makes these guides particularly useful is that they are created By persons with dementia For persons with dementia. And they are Canadian.

The Memory Workout Guide, the first guide in the Person with Dementia series, provides examples of cognitive exercises and it encourages persons with dementia to develop and maintain regular “workouts” for the brain so as to function better while engaging in enjoyable activities.

The Managing Triggers Guide, the second guide in the Person with Dementia series, is a practical resource that outlines the main triggers experienced by persons living with dementia, and offers solutions for how persons with dementia and their partners in care can manage and alleviate these triggers. The guide focuses on managing triggers associated with social situations, verbal communication, changes of abilities and memory, and managing your environment and negative emotions.

The Enhancing Communication Guide, the third guide in the Person withDementia series, is a comprehensive resource that outlines the main challenges associated with communication as experienced by persons with dementia. It explores communication challenges that can occur with family and friends, in social situations, and when communicating with health care professionals. The guide provides practical solutions for persons with dementia and emphasizes the importance of using a wide range of communication strategies in order to make opinions, feelings and experiences known. It also suggests ways that family partners in care and professionals can enhance communication with persons with dementia.

All MAREP guides are available in PDF or in Hard Copy. Go to the MAREP website at: www.marep.uwaterloo.ca (click on “Educational Tools” and choose “By Us For Us”. Or call 1-519-888-4567. You can also call the Alzheimer InfoLine (1-800-611-6345) and we will be happy to assist you.

The Enhancing Wellness Guide, the fourth guide in the Person with Dementia series, focuses on how enhancing physical, psychological and emotional, social and spiritual well-being can help us live our lives to the fullest extent, even after diagnosis of dementia. The guide provides helpful tips for eating well, taking care of your body, being physically active, staying centered with yourself, staying connected with others, and living in peace, all of which are important in enhancing wellness.

The Tips & Strategies Guide, the fifth guide in the Person with Dementia series, is a help-ful resource that contains ideas and suggestions for living daily with an illness causing dementia. The guide provides additional memory “workout” ideas, tips for those in the workforce, and general tips and strategies for daily living.

Living and Celebrating Life Through Leisure. The purpose of this sixth guide in the Person with Dementia series is to share with you some thoughts on living and celebrating life through leisure. Meaningful leisure can be a wide range of activities from enjoying coffee on your deck first thing in the morning to being involved with other people in a more structured and challenging venue. Activities that leave us feeling good are so important in contributing to a quality of life that everyone strives for.

The Living and Transforming with Loss & Grief Guide, is the first guide in the Partnership series, which incorporates the experiences of family partners in care as well as persons with dementia. The guide is a practical resource that recognizes the experiences of loss and grief that come with the journey of dementia, and provides useful tips and strategies for acknowledging, experiencing and transforming with loss and grief. This booklet aims to guide readers through the ebbs and flows of loss and grief to a place of acceptance, peace and hope.

By Us For Us© Guides

NEW ! The Food & Mealtime guide is the second guide in the Partnership Series, which incorporates the experiences of persons with dementia and family partners in care. Food is an essential part of living - it allows the body to function well. Whether shopping or preparing meals, or going to a restaurant to eat, it is important to acknowledge and accept changes around food and mealtimes for both persons with dementia and partners in care. This guide will present many strategies for adapting to the many changes associated with living with dementia

By Us For Us© Guides

Our sister Alzheimer Societies and Associations around the world, as well as many other reputable Health Organizations have published a number of different guides and brochures for persons with dementia or memory loss. Here are links to a few. If you are not connected to the internet and would like help getting your own copies of these, please call us at the InfoLine (1-800-611-6345) and we would be happy to assist.

Facing Dementia:How to Live Well with your Diagnosis: A booklet from Health Scotland and Alzheimer Scotland that cov-ers important topics such as diagnosis; effective coping strategies; legal and financial planning; practical support. Available to download at http://www.healthscotland.com/uploads/documents/9365-FacingDementia2008.pdf

“What Happens Next” written by and for people with dementia Valuable updates on AD research and news through the national Alzheimer’s Disease Education and Referral (ADEAR) (USA) organization.http://www.nia.nih.gov/Alzheimers/Publications/WhatHappensNext.htm

This web site for Alzheimer’s Australia has a section called “I Have Dementia” with an excellent assortment of detailed Help Sheets on different topics that can be downloaded. http://www.alzheimers.org.au The website for the Alzheimer’s Society of the UK has a section called “Living with Dementia” with an excellent assort-ment of brochures and videos, many of which can be downloaded. http://alzheimers.org.uk/site/scripts/documents.php?categoryID=200342

Other Guides and Brochures

Living Your Best with Early-Stage Alzheimer’s by Lisa Snyder (2010). Recent advances have made it possible to diagnose Alzheimer’s disease when symptoms are mild. Today, when a person is diagnosed, they may have many, many years ahead with only mild symptoms. The result is that a growing number of people with early-stage Alzheimer’s are seeking information about how to take charge of their lives, manage symptoms, and cope effectively with the disease. This book is a working guide to help the person with Alzheimer’s feel empowered to move forward in life in light of this challenging. This book is available for loan from Regional Branches of the Nova Scotia Public Library, and from the Handrahan Resource Centre at the Alzheimer Society of Nova

Newsletters and Magazines

INSIGHT – A bulletin for and by people with dementia

Insight is a quarterly bulletin from our friends at the Alzheimer Society of British Columbia. It offers helpful strategies, including tips from Early Stage Support Group members from across British Columbia, and personal stories about people who are living with dementia. The majority of the content is written by people with dementia. You can find Insight on the internet at http://www.alzheimerbc.org/News-and-Events/Newsletters.aspx

PERSPECTIVES – A bulletin for and by people with dementia

Perspectives is a quarterly newsletter written for people with dementia that addresses the concerns, reflections, and coping skills of individuals with Alzheimer’s or a related memory disorder. It provides up-to-date re-search, explores relevant topics, provides a forum for discussion, and builds bridges between people with memory loss around the world. Individuals with Alzheimer’s or a related disorder contribute their perspectives to this newsletter in the form of articles, poetry, or letters. Perspectives is written and edited by Lisa Snyder, LCSW and published by the University of California, San Diego, Shiley-Marcos Alzheimer’s Disease Research Cen-ter (ADRC). Robyn Yale, LCSW and staff of the Shiley-Marcos ADRC serve as editorial advisors. You can find Perspectives on the internet at: http://adrc.ucsd.edu/news.html.

Books While there are many books on the market that discuss dementia, the following are ones we have found that are either written by persons with dementia or speak directly to the person with dementia first, rather than to the health care professional or the family/friend partner in care.

Dancing with Dementia by Christine BrydenChristine Bryden was a top civil servant and single mother of three children when she was diagnosed with dementia at the age of 46. Since then she has gone on to challenge almost every stereotype of people with dementia by campaigning for self-advocacy, writing articles and speaking at national conferences. You can order the book and read more about Christine at her website: http://www.christinebryden.com/

Alzheimer’s from the Inside Looking Out by Richard Taylor. Baltimore: Health Professions Press, 2006. One man’s essays about living with dementia.

Living with Mild Cognitive Impairment by Nicole D. Anderson, PhD, Kelly J. Murphy, PhD and Angela K. Troyer, PhD. Approximately one in ten adults over 65 has some form of mild cognitive impairment or MCI-thinking problems that go beyond those associated with normal aging, but that fall short of the serious impairments experienced by people with dementia due to Alzheimer’s disease or other disorders. This is the first book written specifically for individuals with MCI, for their loved ones and for the health care professionals who treat them.

Online Resources For People With Alzheimer’s disease and other dementias:

Ageless Design has an email news service called “Alzheimer’s Daily News.” Sign up through their web site and receive daily national and international news clips that report on Alzheimer’s and related dementias. This is a very reputable web site and a great source of updated information. You will only receive one email a day. http://www.agelessdesign.com

Alzheimer’s Association Message Board and Chat Rooms: The US-based Alzheimer’s Association offers an online forum for people affected by Alzheimer’s with their page dedicated to message boards and chat rooms. Read what others have to say by browsing the page, or register to share your thoughts and experiences, query your colleagues and make new friends. https://www.alzconnected.org/ Alzheimer’s Disease International ‘I can, I Will’ Idea Library: This site is a library of ideas to help people around the world stand up and speak out about Alzheimer’s disease and related disorders. These ideas have been contributed by people just like you. http://www.alz.co.uk/icaniwill Alzheimer Society of Canada Message Board. This is a place to share your experiences, and exchange information and tips about Alzheimer’s disease or any form of dementia. The message board contains a number of forums organized by topic. The forums are organized into categories which include those for people with Alzheimer’s disease or another form of dementia. http://www.alzheimer.ca/en/We-can-help/Alzheimer-society-message-board

DASN International (Dementia Advocacy and Support) is an international internet based support network established to promote respect and dignity for persons with dementia, provide a forum for the exchange of information, encourage support mechanisms such as local groups, counseling groups and Internet linkages, advocate for services for people with dementia and assist people to connect with their local Alzheimer’s Association:http://www.dasninternational.org/

Books

DementiaGuide.ca is a website to help people with Alzheimer’s disease and their caregivers recognize, understand, record and monitor their symptoms through an interactive tool. For more information on this tool including sub-scriber cost, please visit the site. Fisher Center for Alzheimer’s Research Foundation: This site links you to many of the Fisher Center’s resources on the “I’ve been diagnosed with Alzheimer’s . . .” page, including a free link to their Preserving Your Memory magazine.http://www.alzinfo.org FTD Support Forum: The purpose of this forum is to provide a place for safe and secure communications for people who have been diagnosed with FTD and those who care for persons with FTD.Members are dedicated to supporting one another in a sensitive, respectful and sincere manner.This forum also encourages increased awareness of FTD within the medical community and the general public, with the belief that knowledge will bring improved access to support networks that are emerging on the internet and elsewhere. http://ftdsupportforum.com/

In Our Own Words: This creative writing project in Glasgow, Scotland lets people with dementia who are living in Glasgow City Council residential care homes create writing, have their voices and and be recognised as authors in their own right. http://dementia-authors.org/

Online Forum for People with Early Lewy Body Dementia: LBDA’s website has a private discussion forum for individuals living with early LBD This forum, moderated by an LBDA volunteer with LBD caregiving experience, allows people with early LBD to engage with other people with similar experiences. The forum is available 24/7, allowing people with LBD to post questions and read other peoples’ experiences with LBD during the time of day that suits them best. To gain access to the forum, please send an e-mail to forum@lbda.org with the following information: Your name and a brief introduction about yourself and your journey with LBD. Don’t forget to mention that you would like to join the private forum for people with LBD and provide them with a username of your choice for signing into the forum

Talking Point is an online support and discussion forum hosted by the Alzheimer’s Society of the UK. It is for anyone affected by dementia. It’s a place to ask for advice, share information, join in discussions and feel supported. http://forum.alzheimers.org.uk/forum.php

The Personal Directives Act in Nova Scotia enables Nova Scotians to document their wishes regarding personal care, and who makes decisions on their behalf in the event that they are incapacitated and are unable to make these decisions themselves. A link to details and free forums can be found online at novascotia.ca/just/pda/

Disability Tax Credit is for individuals who have an impairment in physical or mental functions that is severeand prolonged. The form that can be used to apply for the disability amount can be found at the following link. http://www.cra-arc.gc.ca/E/pbg/tf/t2201/ First Person Accounts: Some people who are diagnosed with dementia write blogs, a type of online journal about their experi-ences. Maey McKinley lives in Ontario and uses a lot of humour. David Hilfiker is a retired physician (medical doctor) You can read about their journies by visiting: Mary McKinley - www.jim-mary.com David Hilfiker - www.davidhilfiker.blogspot.ca In HRM, Seniors 65 and older ride free at certain times. For more information, visit www.metrotransit/ssi/seniorsfree.html

Any information contained in items on this list is not intended to be healthcare or medical advice, diagnosis or treatment, but is presented for information purposes only as part of our current awareness service. ASNS is not responsible or liable, directly or indirectly, for any form of damages whatsoever resulting from the use (or misuse) of information contained therein.

Other resources you may be interested in: